My Endometriosiis Story

Hello ladies. I would like to share my story with you all and see if any of you have experienced anything similar to share stories etc. At my first laparascopy, severe endometriosis was diagnosed and my ovaries had stuck together and were covered in cysts. Within a year the symtoms came back and seemed worse and the pain had spread, the pain was around my pelvis, stomach, right side and back. The pain eventually became constant and agonising. Had frequent water infections and constipation which made the pains worse. Hot sweats and urinating frequently all the time. After several appointments with my consultant and been referred to another consultant I was sent for a MRI scan and told I would be operated on in the future. The MRI scan showed that my ovaries were attached to my bowel. I went in for my laparascopy on 7th November. I was told that my ovaries and callopsed and stuck over my bowel/rectum. One over was really small and crushed and the other had a large cyst on it. They had to stitch my ovaries in place.The 2 surgeons said it was a horrific operation and my endometriosis is really severe. I'm 38 and have always wanted children but I only met my partner 18 months ago and so as soon as I have recovered and feel fit and healthy we would like to try for a baby. The consultant said to me that it is very unlikely that I will be able to conceive naturally and that he will refer me to the IVF unit in 3 months at my review appoitment. I know that everyone says they can do all sorts these days, but it is still upsetting news to hear. The consultant has started me on a 3 month course of the Prostap injections to put me through a temp menapause (like from my first laparascopy, but obviously this didn't seem to help the first time). The hot sweats have got worse already and I am still in pain after my operation and so I am wondering how long I should expect to be in pain for? Thanks for reading my long.....story and I would appreciate any of your thoughts/experiences. XxX Karen XxX

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  • Bless you hun. im 25 and was told at 18 that id nevr have kids. i am also on the prostap injection and will be for the next 20 or so years till i reach menapause age. when i was 18 i had a major op and thats when they found the endo and now there is nothing more they can do for me except keep me drugged up for the pain. i am going to see a specialist next week in hopes that he will be able to do an op and help me as the head consultants at my hosp wont touch it again. i have 2 wombs and they are stuck to my overies and tubes and bowels as the docs said it is like verything is in a ball surrounded by scar tissue and adhesions so they cant see anything and dont know where to cut. it is crazy with all the technology that they cant help women like us. also with the injection it has not taken away any of my pain and i dont understand why they think it does. it will however keep the endo at bay and stop it from growing more. i wish you all the best with trying for a baby and never give up hope or lose faith as miracles can happen. xxx heather.x

  • Bless you too Heather, it's a horrific disease and I can't believe that they can't do more for endometriosis. I get the impression that not enough research or money goes into this disease. People who don't have endometriosis or don't understand it, just say comments like, 'lets hope they sort you out once and for all this time'. Take care x

  • first of all stay strong an positive . i must post my story to share too. but important on prostap and important cumming to my 6 months on it and the symptoms are dreadfully but if it help then i can cope. i have been doing lots of relaxation as the prostap was making me stress out. also iv found walking or going to the gym and iv had very little pain since i have been on it whichhas been grate. stay positive an fight for what ever you want funny x

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